I just returned from giving my son a juice box in his sleep. His blood sugar was low, 68, and about half an hour earlier it was 62. My son is 6, and he has type 1 diabetes. Right now, I’m his pancreas. I count carbs, estimate how the types of foods he eats will interact with the amount of insulin I give him. I think about his blood sugar at least once every waking hour. I even dream about blood sugar numbers.
However, this won’t always be the case. This is Henry’s diabetes, not mine. Little by little, I’ll hand over the tools and knowledge he’ll need to keep himself alive and healthy. Like a parent teaching a child to drive, we’ll circle the block, drive around town, and eventually he’ll back out of the driveway alone.
In the future, when Henry is his own pancreas, I won’t know about every low, how much insulin he gave himself, nor what he ate. He’ll figure out this diabetes management thing from us (from all the years of talk and practice) but also from other places, like the diabetes online community (DOC). When he’s older, he won’t share all the challenges he has to endure. He’ll rightly look to other people with T1D, and thankfully, the DOC offers amazing resources: personal blogs, research, nonprofits, and communities, like Beyond Type 1.
Beyond Type 1 is an exciting organization that aims “to be provocative, inclusive and disruptive: putting a face on this disease, clearing up misunderstandings about who is affected by T1D and eradicating the stigma that comes from living with a chronic disease. [Beyond Type 1 recognizes] there is a different narrative to be told: that of a strong empowered community living a powerful life beyond the diagnosis” (from www.beyondtype1.org). Unlike some places on the internet, Beyond Type 1 focuses on being empowered and living beyond a T1D diagnosis.
I am beyond thankful that Nick Jonas and celebrity chef, Sam Talbot, spoke up and out about their T1D, and helped found Beyond Type 1. I’m glad there are a bunch of amazing people working at Beyond Type 1 to create a positive community with many resources for education, access, and empowerment.
Right now, Beyond Type 1 is in a fund raising challenge, the Revlon LOVE IS ON 2016 challenge. For the organization that raises the most money, Revlon will donate another $1 million dollars. Please consider making a donation in any amount. We just did.